Marmite on toast: the social crisis and MS

Recently one of my patients chastised me for telling her off for her poor diet, which consisted mainly of bread. She lives alone, which may explain why she eats so poorly. She has marmite or jam on toast for breakfast, a sandwich for lunch and if she feels hungry another piece of toast for dinner.

Interestingly, my mother used to refer to her elderly stepmother as a tea-and-toast lady and I never knew why until I became a doctor. My step-grandmother, we used to call her Aunty Betty, didn’t do marmite but stuck to marmalade. She prefered lime to orange marmalade suggesting she had at least preserved her senses of taste and smell. She lived into her late 80’s and died of frailty. For those of you who don’t know the tea-and-toast syndrome is well described. The following excerpt is from Wikipedia:

“Tea and toast syndrome is a form of malnutrition commonly experienced by elderly people who are unable to prepare meals and tend to themselves. Their diets often dwindle to tea and toast resulting in a deficiency of vitamins and other nutrients. The syndrome often manifests itself as hyponatremia, a low concentration of the electrolyte sodium in the bloodstream, due to the lack of salt in the diet.

The syndrome often occurs once children have moved away, and a partner has died or is dying. An elderly person with nobody left to cook for, or without the skills to cook, will revert to a diet of simple foods such as bread, cheese and crackers, and canned foods. According to the New York Times, as many as 60% of seniors living at home are either malnourished or at risk of becoming malnourished. In addition to the problems lack of nutrients will cause, this state also means that the complications of other illnesses, even the common cold, can be much more severe.

Factors that lead to the syndrome include social isolation, psychological issues such as depression, illness, and physical limitations. Though less of a factor than psychological issues, the increased number of medications often taken by elderly people can also affect eating habits. These medications may suppress appetite, make food taste different, or affect how nutrients are absorbed, making it even less likely seniors will get the required nutrients. Typical laboratory findings for tea and toast syndrome include a low serum osmolality (hypotonicity) with a normal urine osmolality since antidiuretic hormone levels are normal.”

Maybe I should update the Wikipedia entry to include multiple sclerosis and other socially-isolating chronic conditions as a cause of this syndrome?  Interestingly, my patient is not underweight, which implies she is getting enough calories. She wants to eat other food, but simply can’t afford more nutritious meals, nor does she have the physical energy to cook because of her MS. Her story is not unique. Three years ago when we did a dietary audit of a group of our Barts-MS patients I was horrified at how poor their diets were in general. Most of our patients eat large quantities of cheap processed foods. The main reason is cost and convenience. I suspect with increasing austerity over the last few years things could have only gotten worse and may get even worse if food prices rise, as predicted, if and when Brexit goes ahead.

An editorial in last week’s British Medical Journal, by Michael Marmot, does not pull any punches. It explains why the social crisis is leading to a health crisis with knock-on effects. Marmot in his final paragraph states: ‘A stalling or reversal of long term improvements in health and increases in health inequalities are of great concern to anyone who cares about health’.  This applies to me as a neurologist working in the NHS. I see the impact of austerity and the social crisis is having on my patients week after week and it is getting worse. The question is what can we do about it? Yes, we. This is not something that can be tackled by one person it is something society has to address.

Our second variance meeting in relation to MS services, called ‘Raising the Bar’, in Birmingham next month (8th & 9th July) has a workstream dedicated to the social determinants of health. At the end of year 3, we want all participating centres to be working differently and managing MS holistically. This will include programmes to screen and manage comorbidities and promote lifestyle interventions. To make sure it is not only MSers in the top echelons who benefit most from changes in service provision we want all HCPs to adopt a ‘no patient left behind’ philosophy as part of this holistic management and embed this philosophy in all MS services.

How we make this happen with fewer resources is going to require ingenuity and a different way of working. We are going to have to create disruptive new systems to make sure that all people with MS, who are covered by a particular service, have access to that service.  We don’t want vulnerable, less educated, ethnic minorities or less well off patients to be disadvantaged by the service.

This is why we are reaching out to all HCPs and people with MS and their families to help us change the current and outdated ‘Victorian’ model of healthcare, which is configured around the HCP and to make the person with the disease the person who controls their care. I anticipate the changes happening gradually and incrementally; one brick at a time. By linking the changes to a national audit and the MS Academy, a platform to share best practice and resources, we will hopefully create an environment that will transform the way people with MS are managed in the NHS.

What concerns me, however, is how do we tackle the social crisis? Our patients not having enough money to buy food or access transport to attend group therapy to tackle social isolation? Surely we need more resources for the NHS and social care? Marmot politicises his Editorial by linking the social crisis to changes in government: ‘In the UK, the fact that the break in the long term rise in life expectancy began in 2011 and has been accompanied by an increase in health inequalities must lead to serious questions about whether the government elected in 2010, with its flagship austerity policies, made a difference for the worse’. This makes you worry that under the current government there will simply be no new resources for implementing our ideas. This raises many challenges and will make the task harder. We may have to mobilise a volunteer army of helpers or we are going to have to show senior NHS managers that the changes we are proposing will save the NHS money.

In a parallel editorial to Marmot’s, Rajan and Mckee remind HCPs that we have a duty to speak out. The following are a few excerpts:

…. Nothing Left in the Cupboards, by Human Rights Watch, describes a country in which tens of thousands of families lack enough food to live on. The second report, by Philip Alston, the UN special rapporteur on extreme poverty and human rights, also examines food poverty but goes much broader, covering the many ways in which successive British governments have been “dismantling the social safety net.” Neither report makes comfortable reading for the British government. The Human Rights Watch report talks of “a grim picture of the grinding reality that teachers are dealing with,” with children arriving at school hungry, without warm clothes or dry shoes. Alston describes a situation that is not just “a disgrace, but a social calamity and an economic disaster rolled into one.”…..

…… In 2002, Derek Wanless published a landmark report commissioned by Gordon Brown, then chancellor of the exchequer. It concluded that sustainable NHS funding into the future required a “fully engaged” scenario, with investment in action on the determinants of health allowing people to live longer in better health. Yet, since 2010, mortality has been stagnating and, for some groups, increasing……

……Yet the British government is currently in a state of near paralysis as it struggles with the Brexit process. And as Alston notes, “If Brexit proceeds, it is likely to have a major adverse impact on the most vulnerable.” When added to the damage that any Brexit will do to the NHS, the outlook is extremely concerning…..

…… Over 150 years ago Rudolf Virchow said that doctors are “natural advocates of the poor.” When, as Alston argues, “the government has remained determinedly in a state of denial,” it is time for all health professionals to stand up for those who are falling through the increasingly large holes in our social safety nets. We must do so not only for the individuals concerned but for the future of the NHS, which, as Wanless pointed out, cannot continue to pick up the pieces following failures by others…….

If the issues in this blog post affect you, or someone close to you, please do not hesitate to reach out to us or your local MS team. We are committed to improving the care we provide all of our patients with MS and that includes helping you with your social issues.  

Michael Marmot. A health crisis is a social crisis. BMJ 2019;365:l2278.

Rajan & McKee. NHS is picking up the pieces as social safety nets fail. BMJ 2019;365:l2360.